9.02.06, The Long Arm After Sunset

[during daylight]

When the sun goes down you will find me at my keyboard.

You will not find me today, since I slowly skirt from book to book,
and from here to somewhere else.

Occupy a small piece of park grass not far from water spray, a piece no one
else wants. It's supposed to be this way. No conflict, no mine, no retroactive nostalgia, just reading and time's passage. All the innocent voyeurism.

Remember, avoid prolonged exposure to the sun while taking chemotherapy drugs.

Franky Scale: 6. Again, getting drug times, food times, sleep times all right. Somewhat trickier than it sounds.

[after sunset: (This added a few hours after this post, I guess I don't want to apologize for it, I take what you said, DP, to heart, and thanks to the both of the commentors so far. But since out of genuine caring some of you might feel this kind of "talk" is too grim, just remember it's good for me to express it. It has to come out sometimes, on occasion it just needs to make its way out. Already there is enough inside me, in all the various states of matter and emotion, to try to cap it all. I only want to stem any over reacting, just in case. This kind of pain and fore-trauma needs to be experienced for it to dissipate. I do want comments though, as I always do, since they help keep this whole thing moving and alive, they keep us in some sort of dialog I imagine. I just wanted to prevent any over reaction in them. In mutual understanding then.)]

A few comments, including some off-blog through email, have come in about my last doctor's appointment and the issue of pain. Thank you all and let's do assign a special Pile of Shit Award as was suggested. Slarry, you mentioned or asked about the procedure itself. Well, if you're going to do research you might first want to see four abstracts/articles I have on it — it actually seems quite good, low risk, and is very standard procedure for pancreatic cancer pain — and if you do look it up notice that it's officially called the NCPB, or neurolytic celiac plexus block. The celiac plexus contains the primary nerves going out from behind the pancreas, so you kill deaden the nerves and you usually end up eliminating a good deal of pain (74% of the time). One study even shows a slightly lower mortality among patients who underwent the procedure (perhaps because of increased quality of life?) but I don't believe that's an entirely reliable conclusion since the study wasn't specifically designed around that information. Overall, it looks good and has a zero percent mortality, from what I've read.

Discussing the NCPB forms a good transition into the next topic, which might fall under the category of morbid thinking. For the past couple of days I've been more preoccupied — not unhealthily — with death time. Reading the abstracts for those articles is part of the reason. Information about those who undergo the procedure inevitably leads to specifics about how many people undergo a re-do after about three months, and how many don't live that long.

Couple that with dreams. Where supposedly the unconscious, which itself is structured like a language, speaks. A wish fulfilled, though usually several steps removed through displacement, symbolism, overdetermination, etc. Two dreams this week remind in part why sleep might be necessary but not always desirable for me. One, I totally lost the content of, but the feeling I awoke with is better left unsaid. True to the dream structure, it's what cannot be said. In the other, however, I do remember some of it and it involved spending some time with someone I know, who's dead. Someone I knew. You don't have to be Freud to makes some sense of it.

The Wednesday meeting with those two doctors, which in terms of being put off and realizing how (un)important you are to The System truly resonates with David's story about his mother, and the dreams, and a little catch up on my own management schedule all conspire against high Franky Scale numbers. Then there is simple the passage of time. There is Camus telling how only for the condemned is there liberation, only for those last days does the indifference to draining minutiae reveal itself. There is also at times a feeling not of proactive choosing the absurd, more Camus (an active daily confrontation of a meaningless life, rather than a living death chosen by others), but of just being tired. Only problem is that I can't always distinguish the cause — from chemotherapy, from missing sleep due to pain or due to anxiety, from — here comes a term I don't like to even say or think — cachexia. The wasting away process.

Your cancer grows while the rest of you wastes away. It just gets "healthier" while you pay the price. Quite a lot of people die specifically from cachexia. People with pancreatic cancer that is. Now, do I apologize for being so heavy here? Well, it has to happen somewhere and I expect if you're reading, then to some extent, you're already along for the ride. I read the words "advanced" and "terminal" and "late stage" and that too is tiring. It creates an unproductive cycle where learning about the disease might "save your life" and yet the more you read the more you're battered over the head with these terms. With the reminder.

The book What Dying People Want is so benign and sensitive compared to a medical article. Yet that too, I can only stand to read it for so many pages at a time. . . . Where is all this going? How did it get started? I thought of writing about little everyday routines, about the park, the sunset, normalcy, about sitting outside editing poems for a friend and making notes for projects in the future.

But today the reminder has been serious, the words "terminal" and "advanced." Sharp awareness of what time a pill must go down. So in the end, the sun, park, poems, etc., I still feel like much of these is being held a certain distance out in front of me, held by some anonymous hand at the end of a very long arm. I don't know whose arm, but it's sinewy, strong, looks possessed of endurance. I stand and stare, it waits extended. A game of chicken where no movement wins. A game with no winning — so like one dear friend recently reminded, I have to keep standing, face up, taking all the absurd fucking time that hangs in between.

9.01.06, Deciding on Next Procedure

This is all boring material but needs to be passed on. It's all about my Wednesday doctor's appointment with Dr. Saunders to discuss a possible procedure I might undergo for pain reduction. (below)

Today has been quiet and bookish, I've been holed up trying to finish some writing. For Franky Scale everything is fine, no incident...what's the number for that? If I stick with trying to rate it based on lack of pain or other problems, which I probably should, then 7 today. Despite my use of narcotics. (below)

The Celiac Plexus: This endoscopic procedure involves the standard EUS (endoscopic ultrasound, or garden hose down the throat with a camera and a needle or two on it, shoved down into the gut or “belly” as the first doctor liked to call it) and then the injection of alcohol into the celiac plexus in order to numb or kill the related nerves. The goal is to reduce abdominal pain, and a side effect/bonus is the likelihood that I’ll be able to reduce the amount of “narcotics” I take. Less constipation results too, we hope. This was the gist of my Wednesday appointment with Dr. Saunders, although most of my time was spent with a Dr. Scanga because the former was stuck with a patient for about 45 minutes.

Curious, there was a distinctly judgmental or moralistic tone I caught during this appointment: “You’re taking a HUNDRED mg of oxycontin every day?”, bushy eyebrows raised, and you could just hear the suggestion in his voice. This was Scanga. I got the sense of being looked at askew like (a) I shouldn’t need that much medication for pain, (b) I should tough it out for odd puritanical reasons, (c) I might be faking it to try and overly enjoy the meds, or (d) who knows. I said nothing then, except when later in our consult I told them that pain management is the single key to improving the quality of my life, which is short, and something they need to consider. Don’t know why but I could only say anything indirectly at the time. The whole issue of terminal-ity hadn’t been brought up and I feel they were more uncomfortable talking about it than I. The difference between these two GI fellows and Dr. Whiting and EVERYONE at the SCCA is like night and day. The former group just doesn’t seem to get it, the latter is entirely sympathetic and would never criticize what you're doing or how you’re doing it to relieve your pain, or manage it. Why should they, you're fucking dying?

Wednesday’s boys were a little lacking, then, in their terminal bedside manner. And I learned a new angle on the use of euphemism. So many times they use is to protect the patient or themselves, to make the world sound softer, more fuzzy, to hide a procedure or fact from immediate understanding. Non-resectable, for example, means “we can’t operate”; ablation, killing some nerves and possibly reduce pain; apoptosis, the dying off of cells; etc. What I found on Wednesday was the reverse use of euphemism, that is, the deliberate non-use of a more euphemistic term to make it all sound more coarse.

At SCCA my pain meds are usual referred to by drug name, as opiates, or even opioids. The term “narcotics,” with is its potentially flashy and negative connotations we get from the news and drug wars, is rarely used. At this appointment, however, the word narcotic was used regularly. Call me paranoid, if you will, but the term was used to a specific non-euphemistic end, that’s what I sensed. You tell someone they’re using quite a lot of narcotics as opposed to quite a lot of opioids and I think a different message is conveyed.

Otherwise they seemed fine, competent (to the degree I can judge this), and possibly skilled. Risk involved is loss of feeling in the lower body, something very, very unlikely they assure me as they stress how routine this 15-minute procedure really is. In very rare cases paralysis might occur, but they dodged this question, which I asked because Whiting told me about it. (He’s far more straightforward.) Doctor #1, Scanga, was the fill-in-while-real-doctor-is-late guy who had to gather general info about me and press on my stomach while the primary GI guy or EUS specialist was busy with another patient. Doctor #2 came in only to give me a little sales pitch of why I might do the procedure; and to tell me he thinks I’m a likely candidate for it given my pain situation. It works, he says, in 70-80 percent of the patients, who will feel significant pain reduction; however, they might have to have the thing redone in three to six months time.

Time to do more homework on doctor #2 (Dr. Saunders), on the procedure, and then decide whether to do it.

8.31.06, Post Chemo Day

Chemo's done for the day, my Franky Scale is about 5, feeling drained and just wiped out in general from lying all morning with my pot-o-cath accessed, my veins all open. Now my eyes need closing and rest of me needs some sleeping. Rest now, and later tonight I'll get up some details from my labs and my appointment in GI territory yesterday.

8.30.06, Another Doctor in the House

I'll put today's Franky Scale at about a 6, since it felt slow and somewhat empty just pouring out time. At four, I went in to meet with another GI doctor to discuss a procedure that might help alleviate some pain, had to wait, of course, and then all the usual meeting with a new doctor routine.

In fact most of it's so routine I can't bear to write details about it tonight, but I'll give it a shot after a.m. chemo tomorrow. What a treat to wake up to. The Disenchanted Princess (have you noticed how many people like to drop the modifier in that title?) has returned to the disenchanted forest that abuts NYC. My studio unshrunk once more, and I return to chemo tomorrow. Then I'll try to get across all the details from Dr. GI about my guts, or "belly" as they like to keep calling it. My "belly pain" — makes me feel slightly infantilized, kind of like being in grad school again.

OK, tomorrow, chemo, Tales of Endoscopy, the GI man and belly pain. All interspersed with a highly philosophical day in general, trust me. Till then.

8.29.06, MS in a Bottle

One of the only rules of life that seemed to remain consistent for me, until about 5 months ago, and even then my diagnosis only confirmed it, was that life always throws you what you don't expect. A partial sports metaphor, I realize, but not meant to be . . . Now, too, I find another confirmation of it. Like most every academic I know I was always plagued by insecurity about "the book," especially the first book, and how crucial it is in terms of securing one's career and locking in tenure. The other items required for tenure, such as service, teaching, and non-book publications have all been easy enough so far; but the book psychology can be fierce and debilitating. After my diagnosis, all the worry about "Is it good enough?" has vanished.

A good sign, one could say. At the same time, one might say "an inconsequential" sign because the tenure game is no longer part of my individual scenario, simply no point in thinking about it any more. It makes sense then that I'd stop worrying about "the book." Still, I figure I'll send off the book, which is a real sleeper, to see what happens. If I can survive the waiting period while editors ignore my envelope, open it and slide it back into a massive pile of similarly boring projects "to do," and then procrastinate the actual evaluation process of determining whether they want to send off my MS for anonymous review by "experts" in my field. My field which has less than a handful of experts in it, if you specifically count it as being Korean poetry. (I guess this should be a fore-warning to at least one of the blog readers who will likely get a copy of what I send out, so one more thing that will show up on your plate.)

Now I yeild to the process, since the psychology of getting the manuscript just that much better and making my arguments that much more cogent and my writing that much clearer has been swept aside. The Thing will go off, this week I hope, and like Poe's MS in a bottle it's thrown into this sea of waiting, of expectancy, of not knowing. When it finally doesn't matter much what becomes of the project, that's the moment the project strangely moves itself back onto my plate. And since there is no longer such a complex in my head about the quality of the Thing, I let myself do it again. Life's weirdness, life's unexpectedness at every turn.

I was teased very recently, lovingly of course, about how I should spend my time worrying about "work" and sublimating my desires and pleasure in order "to get things done." None the less, I walk back into the realm of sublimation. Hm. It all sounds so much more mundane and trivial once it's put down in writing in front of me, but it's what life has for me right now. Perhaps it's part of a different psychology of distraction and part of some therapy by which I ignore the daily fact of disease, the constant progress of it all, and keep my eyes on something else. It is slightly more enjoyable than counting out pills and recording what I took at what time, how much, how many, what time, when again, and so on. During week two of this chemo cycle, before it's time to restage and see whether any of this treatment is even working, what else is there to do? I start to wonder why I'm even writing this here today. . . .

The day is young still but I'll put my Franky Scale at a 6 or 7. My GI system is not completely obedient but also not as rebellious as it could be. More to come perhaps, but for now I'm sublimating.

8.28.06, Take Out

The grand and traumatic experiences of life, the zenith of an existential crisis, snuffing out a youthful candle, a host of other colorful metaphors, and in the midst of it all it's relatively comforting to know that for a lot of us who are lucky enough, there is still take out pizza. The man who does the NPR Cancer Blog (Leroy Sievers, link from my blog) mentions somewhere that he is not one of those people who believes diet will change anything to do with his treatment, so he eats whatever he feels like. Chalks it up to that often elusive but usually always useful phrase, quality of life. I understand where he's coming from.

They haven't told me I must stop eating pizza — in fact, they haven't given me any imperatives at all because in reality the only issue I deal with any more is quality of life. A few questions about specifics on longevity, a few questions of "how you want to be" and that is all. Point was, though, that if they said "no pizza" just like if they said "no coffee" I'd probably just say "Thanks for playing. Next." Which is to say, tonight's dinner was pizza and it was yummy.

Franky Scale stayed around a 7 today. Was able to get out and run again, with a little motivation from the increasingly- and ever-popular K., and that worked out pretty well. Hot for this town at about 85. A great physical distraction, however, and it does play a role in an important, albeit rigged, psychological game. Plus, I'm very sure I've gained that pound, maybe even over a pound. (I suppose the key would be to get a scale.) Even with cancer, it's all baby steps. I bought a blender last week. I can only make such commitments a little at a time :-)

It's been a good week and this is reflected somewhat in a few shorter blogs, it seems. On the other hand, you shouldn't read that as one week of long blogs equals Scott is not doing well. Just to say a good week, a needed week. More as we go, including trauma and the existential. For now goodnight. Back to My Own Private Idaho.

7.27.06, Sunny & No Clouds

I'll give everyone's eyes and my fingers a rest today, except the Franky Scale. Very warm for Seattle today, about 85 at it's 7 p.m. Nothing but sun everywhere. The scale comes in at a 7, with little going on in terms of side effects. Minor nausea. General fatigue that comes and goes. I've never tried to count how often it happens but, say, two episodes today where I felt like a bus hit me. That' relatively normal, however, unless we're in a week with no chemo drugs at all. And with that, until tomorrow.